Gabapentin ineffective

[Derry323]

Hi everyone. I've suffered RLS for 20+eff years. Most of that time I was prescribed PRAMIPEXOLE until I augmented. About 6 months ago I was given Pregabalin and was taking 275mg a night. Although not perfect, it did offer some relief. I then moved and my new GP was unhappy with me taking Pregabalin as it wasn't something he'd prescribe for RLS. He has now put me on Gabapentin originally at 300mg, but after a heated telephone interview he agreed to up that to 900MG a night. However this is still totally ineffective to me. I'm up pacing the floor 3 to 4 times a night and then up for my work at 6am. I'm really suffering at the minute and unsure how to proceed from here.

[Tanker1]

I think pregabalin is much more effective than gabapentin. Here is one discussion I found:

olh.ie/wp-content/uploads/2...

At the suggested 6:1 ratio, that would mean you would be taking 1650 mg of gabapentin. But really, if the pregabalin was working why switch? Seems rather ridiculous.

My other thought is you should consider finding someone more responsive to your needs. My recommendation is to find a neurologist specializing in sleep disorders.

[welschrispy in reply to Tanker1]

I once saw a( supposed) RLS specialist who insisted that I should take Gabapentin. I tried it....It didn't do a thing for me! NOTHING! I have since been told that it works for Parkinson't but not for RLS. Curiously.....?

[Tanker1 in reply to welschrispy]

After reading quite a few blogs, it's apparent that there is much variability from patient to patient. What works for one person doesn't work for another.

[Hidden in reply to welschrispy]

Very curious since Parkinsons Disease is caused by degeneration of brain cells and hence insufficient dopamine, gabapentin would be useless for it.

Gabapentin is officially recommended for RLS.

It isn't however, guaranteed to be effective for everyone and you are unfortunate.

[Doings]

Sounds an awful situation can you change doctor or ask him to refer you for a second opinion. I’m taking magnesium whilst I wean off pramipixole which seems to help but it’s early days yet. Good luck.

[Lstenbro]

Gabapetin has also more sideeffects and for me pregabelin was more efficiant for my RLS. To get the best effect I use a small dose pramioexol, like 0,045mg. Strange maybe, but this extra dose give fully effect together with 150 mg pregabelin.

[Parminter in reply to Lstenbro]

Interesting. How do you get the 0.045 mg dose? That is one-third of a tablet?

[Lstenbro in reply to Parminter]

It's 0,18 shared in four🌝

[Jumpey]

I'm so sorry you are in this situation. Some doctors!!! I agree with the others. Change doctors. You may get a little relief in the meantime if you buy some cocodamol because of the codeine in it. It's a low dose but worth a shot if you are desperate. You could also email Dr.Buchfuhrer and take his response to your doctor. I have used his expertise in this way and it has helped. Good luck.x

[Hidden]

I think your doctor is out of order. His reason for not prescribing it is not really defensible.

Medicines should be prescribed as necessary and taking into account their effectiveness, safety and suitability for the patient. Patient's preferences should also be considered.

Doctors should also make care decisions in partnership with the patient, not dictate treatment or coerce anybody in any way. E.g. in "heated" discussion.

This is failure to comply with the General Medical Council's guidance on Shared Decision Making and Consent.

His personal prescribing habits are of no relevance.

As Tanker 1 points out when switching from pregabalin to gabpentin you should be prescribed an equiavalent dose. If you aren't prescribed an equivalent dose then, in fact the dose has been reduced. You can refer your GP to the link Tanker gives. This GP is in effect withdrawing treatment.

This a definite error in your GPs judgement.

The ratio of 6:1 is evidenced so to receive an equivalent dose to 275mg pregabalin you should be prescribed, (as Tanker points out), at least 1650. However, because of the bio-availability characteristics of gabapentin it's suggested that increasing the dose over 1200mg has no further benefit so it's best to switch from gabapentin to pregabalin at these higher doses, not the other way round.

You can also refer your GP to the link below.

cks.nice.org.uk/topics/rest...

NOTE this link is to the National Institute for Health and Care Excellence NICE), Clinical Knowledge Summary (CKS) for restless legs.

Firstly the CKS recommends both gabapentin AND pregabalin for RLS.

The recommended doseage is as per the link above.

The CKS is published by NICE, a government funded Health Organisation which publshes guidance for GPs on how to manage specific conditions (CKSs). This guidance is not mandatory, but is evidence based and I can't see any reason a GP would want to ignore it. Especially when he will probably be unable to offer evidence to support his habit.

It's not a good idea to quote this forum or anything written on this forum by members. However, you can refer him to these links whose authority he will find it difficult to dismiss.

I would suggest though, that if you belong to a multi-doctor surgery then ask to see another doctor and if your given the same answer in the same way, you can complain about this to the surgery.

I also think you have some cause for reporting your current GP to the General Medical Council for unethical codnuct and possibly misprescribing (wrong dose) or withdrawing treatment.

There are other issues apart from this apparent battle over pregabalin/gabapentin.

The first is that your GP should have carried out investigations for iron deficiency. Particularly a blood test for serum ferritin. A simple rule for this is that if your ferritin is below 75ug/L then you should start taking an oral iron supplement. You don't need a prescription for this, it's better to avoid prescription strength iron. You just need to know the test result.

Here is a link to information about iron therapy for RLS

sciencedirect.com/science/a...

Also, if you're taking any other medications for any other reason then they may be making your RLS worse, these include antidepressants, sedating antihistamines, some antacids, some blood pressure tablets, some heart tablets, some statins amongst others.

What you eat or drink may be making your RLS worse.

Here's another link to the NICE CKS that gives information about iron levels, aggravating factors and RLS medicine options.

cks.nice.org.uk/topics/rest...

The second thing is that even though the pregabalin was working, it didn't seem to be entirely effective and it is quite a high dose. So you might want to be seeking an alternative to either of them.

You are unlikely to get your GPs cooperation in this however so you may have to request referral to a neurologist. Note that you do meet the criteria for referral which are listed on the same page linked above.

In the case of "refractory" RLS where first line treatments have failed, then an opioid can be prescribed. The opioid licensed for RLS in the UK is Targinact, but methadone or buprenorphine are alternatives .

I hope this helps.

[Derry323 in reply to Hidden]

I forgot to mention that when I told my GP that the 300mg Gabapentin was not working for me, he changed my prescription to Duloxetine. It was only when I got home and researched this drug that I found out that its an antidepressant and can exacerbate RLS. That's what led to the telephone conversation as I told him I was unhappy to take an antidepressant.

[Hidden in reply to Derry323]

I presume he gave you pescription for the 900mg gabapentin you're taking afer the phone call

At any point did he deny that antidepressants make RLS worse?

His conduct is appalling.

Personally I would submit a complaint about him I would ask for an apology and suggest that you may report him to the General Medical Council.

I might consider the GMC anyway.

[WelbyB]

I am uncertain that my blog was sent. I was mistaken about the dose of Pregabalin. I found that150-200mg combined with .25Pramipexol intermittently as needed helps my severe RLS case with augmentation very similar to yours. I may have sent the longer blog only to you instead of the intended whole forum. Welby in Colorado

[marsha2306]

Not sure why your doc is against Pregablin...

[Muftah36]

I have suffered from RLS about 30 years , having worsened in the last 10. I have augmented on Ropinarole and went on to opiates , Tramadol and codeine . When that didn’t give enough relief after a year or so , my doctor put me on Gabapentin . I was very reluctant to take it due to side effects but I couldn’t live with the RLS , so I started taking 300 at night and now added 100 at 6pm for some peace in the evening. It has made a difference for the good, although by no means perfect. I’ll manage with that for now , I’m still up every night at least twice. That’s better than I’ve had it . I’d predict it will have to be increased again but I’ll try to delay any increase as long as I can . It’s not great but hopefully my doctor will be there when I need a change. Fingers crossed on that .